Thursday, September 30, 2010

A Very Diabetes-y Weekend: Part One.

This past Saturday, I attended the Taking Control Of Your Diabetes (TCOYD) conference in Des Moines, IA. It was the first time I'd been to a diabetes "event" outside of a JDRF Walk, and it was also my first time meeting some DOC folks in person. (Speaking of JDRF Walks, that's what I did on Sunday! I'll save that story for Part Two.)

I've been letting my thoughts about the 26 or so hours I spent in Des Moines tumble around in my head for a few days. I'm not sure I'll be able to adequately describe the experience, which has made me hesitant to try, but I'll give it a go. And there will be pictures!

The fluorescent lighting was a nice touch.

I drove over to Des Moines on Friday afternoon. (I'd like to point out that Iowa needs more gas stations, less wind, and more cowbell. Okay, maybe the amount of cowbell was fine.) I checked into my hotel, and upon finding my room, immediately burst into giggles. Though I had booked a regular room, they had put me in a 4-room suite. With wood paneling. And a bar. It was, in a word, ridiculous.

What wasn't ridiculous was the free coffee available 24 hours a day in the lobby. YUM.

A group of us TCOYD attendees got together for dinner that night: Scott and Scott, Kelly, C, and myself. What wonderful people they are! It was my first time meeting them all, and also my first time sharing a dinner with other PWDs. All of us had insulin pumps, and four of the five of us had Dexcom CGMs. Admittedly, I enjoyed the confused look on the face of our waitress as we discussed directional arrows and waved our receivers around. It felt nice to be on the "inside" in regards to diabetes, instead of being the odd one out, as we so often are. This feeling; this instantaneous camaraderie I felt with my fellow PWDs (People With Diabetes) over the course of that weekend, is perhaps what I'll miss most.

Scott, Kelly, Other Scott, Me, and C.

On Saturday, we all walked down to the convention center and got going. The health fair section of the conference included tables for many organizations, including Animas, Dexcom, Medtronic, the JDRF, the ADA, TuDiabetes.org/DHF (where the Scotts were), Diabetic Living magazine (where Kelly was), and many, many others. It felt like a little bit of Diabetes Heaven to have that many vendors and resources in one place, all there to answer my questions and listen to my feedback. And to give me free stuff!

Holding the camera above my head = uneven picture-taking.

I enjoyed chatting it up with the Dexcom folks, and let them know that I appreciated their advertising perspective. (Most printed materials for blood sugar monitoring equipment will have a number like 100 or 104 on the display, which many [myself included] find frustrating. We see a lot of numbers that aren't anywhere close to that, and we appreciate a dose of reality.) The picture of the Dexcom receiver on their poster (and also on their website) displays 160 (!), and the 3-hour graph showed that the BG levels had even gone above the high setting prior to that. I notice details, and I like to positively reinforce that kind of message when I see it. I also let one of them know how much CGM usage has changed my health for the better - almost a 2-point drop in A1C since I started in January. I then watched the guy grin from ear-to-ear and tell me, "That kind of story is why I get up and go to work every morning." And that kind of story is part of why I love Dexcom so much, sir.

I got to take a peak at the MM Revel system - that CGM sensor is much smaller than the older version I was used to. The guy from Abbott also tried to sell me on the Navigator system, but I just wasn't convinced. (Plus, it's off the market right now - just as well.)

Playing Wii Bowling at the Novo Nordisk booth was cool, but I felt disappointed when I couldn't get an answer to why the woman in their huge advertisement back-drop wasn't an actual PWD. There are so many of us out there - why not use the real thing?

We all settled into the main assembly room and heard presentations from all sorts of people - Dr. Steven Edelman, of course (endocrinologist, TCOYD founder and director, and one of my favorite people that day for referring to an old endocrinologist of mine as a "son of a b!tch" to a roomful of about 200 people during a break-out session); a clinical psychologist specializing in diabetes; a diabetologist, a JDRF Scientific Program Director, and a local endocrinologist. Though the conference was mainly geared towards type 2's, there was certainly a place for we T1's as well. And, you know what? I came away from those presentations knowing a lot more about type 2 than I previously did. I'm glad for that.

After some food and a tear-inducing speech from former Miss America Nicole Johnson, we were free to pick from a handful of afternoon sessions. (Though, to be fair, I find Visa credit card commercials to be tear-inducing. But really - her speech was great. And she proudly wears a pink Animas Ping insulin pump!)

Here we are, being schooled on
healthy eating tips. Go Kelly!

I chose the "Diabetes Police and Diabetes Criminals" session, and then watched Kelly Rawlings give a great presentation on behalf of Diabetic Living magazine, titled "From The Better Homes & Gardens Test Kitchen: Cut Calories, But Not Taste!". She even mentioned bacon... turkey bacon, of course.

Our dinner group that night grew by a few members, and so I got to know a few other PWDs on Saturday as well. The odds were staggering - seven out of the eight of us had type 1 diabetes, and I think all of those seven had insulin pumps as well. It was a new sort of fun to be able to play games like "How many carbs do you think this has?", or "Why hasn't the waitress caught on yet that we're ALL drinking diet soda?". We were the loudest table in the place by a large margin.

I hesitate to mention this, as I don't want to it to overshadow how great the conference was, but I think it's an important point to make. When I think of a diabetes conference, I think of it as being a "safe" place. A Diabetes Bubble of sorts. A place where everyone there knows everything there is to know about D, and respects the challenge of living with it.

I was proven wrong. Even in that Bubble, stereotyping exists.

At one point early in the morning, one of the presenters invited everyone in the audience to turn to someone sitting nearby and introduce themselves, as a way for everyone to meet and talk to at least one another diabetic that day. C and I turned around to see a smiling older woman, who scooted over to talk to us. After a bit of conversation and an acknowledgement of her type 2 diabetes, C mentioned that her and I both had type 1. The lady's response was, "Oh, I figured you must both have type 1, since you're so young." (Did I mention I also got mistaken for a college student earlier that morning? It was a great day.)

Later, at lunch, we were seated with some other TCOYDers. It's possible one of them was there working at a booth; I couldn't be sure. What I could be sure of, however, was this overheard conversation: "So he's looking at that sample plate - you know, the one that shows you proper portion sizes? And he chuckles and says, 'Lady, that's an appetizer to me!' And I thought, Yeah, and that's probably why you got diabetes."

It made me mad. And then, it made me sad. Then I got mad all over again. Even here, of all places, someone is going to make a deragatory (and supremely incorrect) comment about diabetes? People need to know that diabetes isn't our fault. We already have enough guilt to deal with, thankyouverymuch.

******

What I mainly took away from attending my first diabetes conference was a great big handful of positivity. I felt energized by the whole experience, and definitely want to attend more in the future. It felt like Diabetes Camp for Adults. That feeling I mentioned - the anti-loneliness, if you will - was apparent throughout my stay in Des Moines.

It was there on the walk back to the hotel Saturday, when I saw (and felt) myself at 93 and dropping quickly on the Dexcom. We were still several blocks from the hotel, so I began frantically searching my ginormous purse for glucose tabs. Of course I couldn't find them (wasn't using the two-sided purse!), so we stopped. And, for the first time in my life, I was all of a sudden surrounded by glucose tabs. Scott had fruit punch, and C had at least 3 different varieties. It was a beautiful moment in a way that few people can truly appreciate.

That feeling stayed with me until a gas station in De Soto, IA. I went inside to grab some coffee, picked out my coffee creamer, and pulled out my pump to dial up the appropriate bolus. A melancholy smile crossed my face, for I then realized - "normal" was now the real world, and I was once again back to being the lady with the weird-looking MP3 player.

Kim - I posted a blog similar to this, a couple days ago. You captured the moment much, much better than I did. I am going to have to retweet this on facebook (can I mix social media like that?).

I also can't tell you how amazing of an experience that weekend was for me. I've done a lot of things for diabetes advocacy, but I've never had as much fun or made as many friends as I did last weekend. It just doesn't get much better than you, Scott, Other Scott, Kelly, and everyone else.

I feel the need to quote Golden Girls at the moment... "Thank you for being a friend." :o) ~C

You summed it up perfectly! I love being surrounded by glucose tabs ... people who understand that meter numbers don't always reflect our sincere efforts ... cheers when there's more than one type of diet soda on the menu ... people who can find a place in their hearts to encourage those with any type of diabetes to take care of themselves as best they can. And, of course, I love, love, love snarky diabetes humor. Thanks for being part of that diabetes love bubble. For me, it has not popped yet.

It was sort of funny, I recently went to mentor training at our local JDRF branch, and they were providing dinner. I had visions of carb counts displayed, being surrounded by other people testing their blood sugar and bolusing, etc. But I was the only one at the table who pulled out a meter and dial up a bolus. As it turned out, I looked up the carbs on my iPhone and was the only adult PWD attending. All the other adult attendees were parents of kids with T1. (Though, three of them had their kids with them and at least one of the trainers had diabetes.)

But I do enjoy some T1 camaraderie at a lot of my everyday social life! Especially when I was first diagnosed, I was soooo lucky to already have a friend with T1. She's been a huge help overall, of course, but I'm now most thankful just to have someone who "gets it" when I blather on about carbs or other D-related stuff!

Kim,Reading your story recounting your weekend in Des Moines, and then reading all the comments, just makes me want to say thanks for taking the time to express your thoughts about the event and your weekend experience. The Des Moines conference was #120 for us here at TCOYD and we are just as pleased today to hear of our participants experiences with us as we were after #1!So from our team here at TCOYD, thank you! Sandy

Disclaimer.

I have absolutely no medical training of any kind. Nothing on this website should be used as medical or legal advice. Please talk to your physician first before making any changes to anything related to your health.